I'm having an EEG tomorrow to see if the "episodes" I've been having are seizures.
It looks like there are tons of different reasons for seizures, and a lot of different kinds of seizures. I don't know that this is what I've had, but it feels like what I would imagine a seizure to feel like.
It started about a month ago, after I started in on my second abx. So I was on Omnicef and Biaxin for a couple of days before it started.
THen I had the horrid stomach attack (still don't know what that was), and have been off of all abx and most supplements since then.
The episodes have let up and aren't as severe or as long lasting, but I feel like I"m on the edge of one most of the time.
WIll they still be able to see anything if I'm not having the episodes where I feel like I'm going to black out?
If I have had seizures, will they take my drivers license away?
Will this be of any help at all? It seems like a lot of people have test after test run for some pretty severe symptoms and everything comes back normal!
Thanks for any support/advice!
Posted by Keebler (Member # 12673) on :
- Q: " . . . WIll they still be able to see anything if I'm not having the episodes where I feel like I'm going to black out? "
NO, and even if you have an episode if it comes from the part of the brain that is not being tracked, it will not show up. The EEG cannot monitor all parts of the brain, especially deep in the brain stem.
Also, if the seizures are from either adrenal exhaustion or toxicity (as happens with lyme) or porphyria (liver's inability to filter out toxins) the chances of a seizure like event showing up as originating from a specific point in the brain is less.
If the seizures are triggered from inner ear overstimulation they will not show up on an EEG either.
The EEG cannot show many things that may contribute to your symptoms.
Is your LLMD guiding the parameters and specifics of the EEG? It would be best if your LLMD referred you to a LL neurologist for the test as most neurologists don't get the full picture.
A QEEG, however, would be a far better test. Most neurologists know nothing about this however. A "Functional EEG" is better than a regular EEG, too, but they rarely do these.
Three EEGs failed to show brain activity during seizures - however three QEEGs (each from a different Ph.D. over a couple years' time) all showed the place in my brain that spikes with sound triggered seizures.
If you REALLY want to know more of how the brain is working, have a QEEG done. You can search that term but most MDs don't do these. Ph.D.s - mostly psychologists or audiologists do these.
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Q: "If I have had seizures, will they take my drivers license away?"
YES. For a certain time period. Probably 3 - 6 months and you would be required to be on seizure control medicines, have repeat EEGs and be seizure-free for a certain period.
The doctor is required to report cases and most states have laws about this. As well, your insurance rates will likely go up when driving is resumed.
All that considered, DO YOU HAVE A LLMD? I cannot tell you how important it is for you to have a LLMD for the best determination of what is happening with you. That LLMD could guide you here.
If you don't have a LLMD, I'd even cancel the EEGs until you get an LLMD and have a doctor who is well educated in lyme and the medications you've been on and their side-effects in a lyme patient.
If you are having seizures - or even not feeling well - you should not drive. Period.
However, my concern is that lyme patients require specialized treatment and if you are forced to go onto some seizure medicines, that is something that your LLMD needs to be a part of determining. The prescribing neurologist will likely not take your lyme treatment into consideration at all.
Any chance your neurologist is LL and has been referred by your LLMD?
Every state regulates the driver's license eligibility of persons with certain medical conditions. The most common requirement for people with epilepsy is that they be seizure free for a specified period of time and submit a physician's evaluation of their ability to drive safely.
During the past decade there has been a significant trend away from an across-the-board seizure-free period, and to a reduced period when one is required. While a number of states still require a one year seizure-free period, most of these will allow exceptions under which a license may be issued after a shorter period.
. . .
Potential Liability of the Driver With Epilepsy
People who suffer from seizures have incurred civil or criminal liability as the result of seizure-related accidents. Such liability has occurred when individuals have driven against medical advice, without a valid license, without the state DMV being aware of their medical conditions, or with the knowledge that there was a particular reason why they should not be driving at that time.
The laws in all 50 states restrict driver's licenses for persons with active seizures that are not controlled by medication and establish rules regarding when and how a license may be acquired.
The usual requirements necessitate that a person be seizure-free for a specified period of time, commonly six months, but increasingly three months or more, and have a physician's statement confirming that the individual's seizures are controlled and that if the person is licensed to drive, he or she will not present an unreasonable risk to public safety. . . .
The laws of the state you live in, not your doctor, decide whether or not you have the right to drive. Your doctor should be able to tell you what the current laws are and whether you meet the criteria for driving.
Before getting a license, you may have to provide proof from your doctor that you are receiving treatment and that the treatment has brought your seizures under control. (Remember, too, that some drugs used to control epilepsy may make you drowsy. If you have just started a new drug, avoid driving until you know how the drug will affect you.)
[ 10-20-2009, 12:30 PM: Message edited by: Keebler ]
Posted by canbravelyme (Member # 9785) on :
When they ask you to breathe deeply, it means they _want_ for you to hyperventilate. Hyperventilation can sometimes bring about a seizure.
I didn't realize this and only breathed in such a way as to avoid having a seizure - I know my comfort zone.
Posted by Keebler (Member # 12673) on :
- A "horrid stomach attack" could be related to porphyria. So can siezures. However, most seizure drugs make porphyria worse. This is just another reason why I hope you have a LL doctor.
Read about secondary porphyria - and KPU - many lyme patients are affected by elevated porphyrins and that can trigger seizures. However, treatment would not be the traditional seizure drugs but, rather, addressing the porphyria AND the lyme or other infections.
Secondary Porphyria: what you should know before starting a CAP (combined antibiotic protocol)
Excerpt:
Symptoms of Porphyria- Porphyria may affect the nervous system or the skin.
When porphyria affects the nervous system, it can cause:
chest pain
shortness of breath
abdominal pain
nausea
muscle cramps
weakness
hallucinations
depression
anxiety
paranoia
seizures
death (fatality noted in other sources, not this article)
- Full article at link above. -
Posted by Keebler (Member # 12673) on :
- A non-LL neurologist will likely NEVER consider that low magnesium could be causing some seizures. Have you already tried all the things mentioned below to help reduce/reverse seizures that may be caused from low magnesium, etc?
If not, I'd do that before proceeding. Just my advice after years dealing with lyme and liver related seizures and doctors that were on a different planet.
ARNICA - BOIRON homeopathic - I take this right after a seizure and it reduces brain swelling. -
Posted by Keebler (Member # 12673) on :
- Do you consume even a TRACE of aspartame (Nutrasweet/Equal)?
Splenda? Diet colas, popcycles or any "sugar-free" products?
Check all your labels for this ingredient. Even cough drops, gum, mints and toothpaste . . . chicken broths, and all packages.
Asparatame can trigger seizures.
So can MSG. Google all the names for it.
As well, and mentioned in the VRP article above, I assume you've been on a gluten-free diet now for some time. If not, I'd sure cancel the EEG until you've been gluten-free for a few months (in addition to the magnesium intake as mentioned above).
If you've had a blow to the head that may have started the seizures, I'd say, go ahead. But, in light that these episodes sound like the problems inherent with lyme, I just hope all that has first been considered.
Main question, after sifting through all this: Is your LLMD guiding your EEG doctor and your total treatment protocol? -
Posted by Keebler (Member # 12673) on :
- So that others can read how you describe these events, here's the link to your recent thread about that:
In that you mentioned that you had inner ear symptoms. As the inner ear can trigger seizures (but few neurologists know that), have you been able to be evaluated by a LL neurotologist or a LL inner ear specialist?
If from lyme, your LLMD should be able to manage inner ear symptoms. However, not everything is from lyme and a doctor who really knows the entire ear/balance system should evaluate you. -------
Effectiveness of a particular blue lens on photoparoxysmal response in photosensitive epileptic patients.
=====================================
Now, after all that, have you done trial periods with any anti-seizure meds? If so, after an adjustment period, did they help?
Neurontin seems the one best tolerated as it does not require the Cytochrome P-450 liver detox pathway as do most other seizure meds. Some lyme patients do okay with this (but for others, especially those with inner ear involvement, it can increase vertigo).
==
What is your adrenal support?
Be sure that your adrenal support is on board for after your EEG tomorrow as a sleepless night is very, very hard on your adrenals. And that can trigger such events as you describe. Also be sure to plan the day to rest. It will take a while for the adrenals to get back up to speed.
I also have done best after such tests to have carrot juice, etc.
Good luck. -
[ 10-20-2009, 01:20 PM: Message edited by: Keebler ]
Posted by DeniseNM (Member # 11182) on :
OMG - Keebler, you rock! I have been reading about all this, and have wondered if it's liver-related.
I do have an LLMD, but he's not up on the neuro stuff and we're having trouble finding a LL Neuro.
I took some Magnesium the other night and did notice that I felt a bit better and less "spinny".
I will do some serious reading this afternoon and consider cancelling the EEG. I honestly think it's related to the meds/toxicity and inner ear stuff (I'm still buzzing/clicking and pounding away in there).
My LLMD has recommended another one in CA, and I will call her right now.
Am at work, I'll read later....
THANK YOU!!!
Posted by DeniseNM (Member # 11182) on :
OK - after reading some of these links, I realize that porphyria may definitely be at play here. These "episodes" started after 3 days of combined abx, and have let up considerably since stopping them.
At the time they occurred, I was taking most of the full complement of supplements recommended by Burrascano. Stopped everything when the stomach went bad, and have started adding some of them back (Vit. b, CoQ10, NAC and Chromium piccolinate).
ALso - the vestibular page was useful - I have most of those problems, too. Are there any LL ENTs? anywhere?
I have an appt. with a new LLMD (Dr. M. in CA) next week. It's only a phone consult, but I'm goign to ask her about getting tested for a lot of this stuff, and then have an in-person appt.
I'm going back and forth on canceling the appt. or pushing it back at least. I have a driver lined up, and some of my friends really think I need to go and do the test, even if it comes back as no trouble found.
Sigh. This is just so much to try and figure out. Thank you guys for your help!
Posted by Keebler (Member # 12673) on :
- First, one should never drive when they feel ill or might have any sort of event that could be dangerous.
Questions to ask before going ahead with the EEG? Are you driving now? If not and you won't be anyway for a long time, this may not matter.
Are you prepared to not drive for at least 6 months if an event occurs but it's one that might be preventable/correctable with a change in your lyme treatment or support techniques?
Since you have the LLMD consult next week, if it were myself, I would wait. I hope the consult is at least one hour.
The friends that are urging you to get the EEG tomorrow - are they well educated in the complex nature of possible causes? Do they realize that the neurologist is likely not interested in the full range of causes but more with a drug to dampen the brain.
Would you be able to tolerate typical seizure meds if you were to have an event tomorrow and be prescribed such meds?
If I thought this was "typical" epilepsy (whatever that is), I'd say, to do this. Get the test. But I've been where you are and the tests have not been helpful. For some others, they do pinpoint a place where seizures spark - but ONLY if it happens during the test.
I had many seizures during one EEG and the needles went flying all over the place with the slightest noises. However, the neurologist said that was impossible, that I must have pulled some sort of stunt. Another black mark in my medical file.
So, you see, my suggestions are coming from my experiences, which may or may not be similar to yours. If you want some answers now and think the technology can help you find an answer, go ahead.
Take some time to quiet yourself and see what you are drawn to. You have to decide soon, though, to cancel by closing time today.
Some more nutrition advice on if you stay up all night waiting for this, eat snacks on and off - I mentioned the stress on the adrenals but your blood sugar can also drop like a rock. Since you will be awake all night, be sure to take extra good care of yourself.
Good luck with whatever you decide. -
Posted by Keebler (Member # 12673) on :
- I think I got side tracked with bigger issues. You asked what to expect.
Have you ever had an EEG?
When you wash your hair, just JUST shampoo to squeaky clean. NO conditioner.
Dry as usual but NO mousse, spray or anything else.
Takes snacks and water with you.
When you go into the room at the clinic, the technician will buff the places where the electrodes will be pasted. This does hurt a bit like sandpaper and then the solution will sting a bit but it's all manageable.
Small electrodes with wires will be pasted to places on your scalp. These will "read" your brain waves. You will feel nothing from them.
There may be a smell from the paste/glue so if you are sensitive, ask in advance if they can open a window or get a fan going before they open the jar.
The smell may not be too bad, though. It resembles paste like we all made as toddlers with flour and water.
Then, you may be asked to look at a computer screen while they run various visual tests.
You may be asked questions during this - or not.
The test does not take very long. You'll want to wash your hair out then as it will be all gloppy. A travel sized bottle of shampoo and a hand towel in your purse will be of help if their sinks are large enough to do this. Otherwise, take a hat with you, go home and sleep with some good dreams.
Zzzz. -
Posted by DeniseNM (Member # 11182) on :
Keebler:
Thank you. My gut reaction is to not do the EEG tomorrow, it doesn't feel right. I don't think I'd tolerate anti-seizure meds at all, and I don't think it's typical epilepsy.
And no, the friends know little or nothing about all Lyme & co, and especially not the neuro stuff.
I just rescheduled it for after the LLMD consult.
In the meantime, I'm going to check out nutrition links for porphyria and drink LOTS of water!
I am only driving a little bit in town (very small town) and then only when I feel stable, which is more often than not lately. Not on the freeway at all, I always get a driver or don't go.
THank you again for your help and support!
Posted by canbravelyme (Member # 9785) on :
1. No one wants to take any medication.
2. You will only find out whether you can tolerate seizure medicine if you try it.
You may find that by addressing the seizure symptoms, you may be able to tolerate abx and address the root cause.
Please don't rule out the seizure meds; they may increase your quality of life tremendously.
There are a number of different meds, so if one doesn't work, you may have to try a few.
Please go to the EEG. It's an easy low impact test.
Then send the EEG report to Dr. W. in CT / ask your LLMD to consult with him.
Watch out for "within normal limits" if you come back "clean"; look for abnormalities "within normal limits". Answers will give you more information to manage your body more skillfully.